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PCR after 8 weeks concern.

Hi everyone again.

Sorry to trouble everyone. Just wondered if you guys could shed some light on my concerns over latest PCR results.

I was on the forum a few weeks ago, stating that my team had informed me that my PCR was 100% on diagnosis, then 20% after first 4 weeks, they then performed another test after 8 weeks which I awaited results of. Well I have since had my latest PCR after 8 weeks and its a slightly lower 20%. This as you can imagine triggered me to wonder about the lack of movement. On asking the team about my initial 100% reading on diagnosis and the teams optimism a few backs for my latest result I was then told no PCR test was actually performed on diagnosis and the 100% was a miss communication. I then grew further concerned that I haven't actually seen a real drop since my diagnosis on 5th June 2013. They assured me I am responding due to my bloods dropping so quick.

So my actual bloods are in remission and have been after 7 weeks of diagnosis dropping from first count on 5th June...
WC 102
Haemoglobin 110
Platelets 1700

Last count 4 weeks ago
WC 3.9
Haemoglobin 127
Platelets 273

... I am 33 and on 400mg Imatinib and have had a few side effects but was happy to ride it out.

My PCR was 20.98% 4 weeks after diagnosis and 20.87% after 8 weeks. My team are saying they have no concerns as yet and some people are slower responders and its only 8 weeks and 2 tests. However I am conscious of the 10% and lower mark at 3 month and have voiced this - I was basically laughed at when I mentioned it. Is it normal not to have a PCR on diagnosis and then one on 4 weeks and another 4 weeks later? They now say its pointless to perform another at 3 months as there won't be enough time to show a drop, it makes no sense to me as surely one on diagnosis and one at 3 months seems common sense.

Sorry for long post but this is something eating away at me and has done for days. I post as I am going to a centre for excellence next week in Newcastle for a one off appt, and would like any info on my results, or questions to consider for then.

...Also should I be concerned?

Thanks John

John,

I understand your concerns and you are right to be questioning if your treatment is right. First advice is to read the European guidelines:

http://www.cmladvocates.net/education/eln-recommendations/91-education/c...

These will answer many of your questions - it looks like you are at a complete haematological response - your doc should confirm this.

I had a bone marrow biopsy at diagnosis and then PCR thereafter - I had some additional ones but that's a different story. You will soon get into the 3 month PCR texting cycle and you will probably see a drop over time.

Your body is working very hard right now and the first 6 months are the toughest - I'm certain you will have a different perspective when you look back at this in a few months time. Naturally we all want to have the best response ever and it is still really early days for you. Take comfort in the lower WBC and normal platelets and get some good Qs ready for your specialist appointment - such as 'at what point would you change my current course of treatment?'

There are several other drugs available if imatinib does not provide the optimal response. Just remember, chances are you will be fine and look long term. Doubt and nerves are normal, especially early on - my confidence grows every day but I still have doubts and I think that's pretty normal.

I don't think you have anything to worry about at this stage and you have a range of options open to you as your journey progresses if you need a change.

Chris

If it's any comfort, I had a bit of a 'block' at around 20% (from a 320% start) as well for a bit and then after a while it started to drop again. I guess we are all different.

Personally, I get a PCR done every 6 weeks but I think this will be moving to every 12 weeks at some point in the not too distant future. I think it's pretty reasonable to ask to have one done at 3 months.

Hi John

It can all be a bit of a whirl/blur to start with and being concerned is understandable. However, you had a good and fast haematological response which does suggest imatinib has significantly reduced your BCR/Abl levels.

PCR at diagnosis isn't routine and indeed they would (should) have done standard cytogenics on your bone marrow to confirm the diagnosis and then give a starting figure based on 20 cells. In my case, it was 16/20 ie 80% but most i think are 20/20 so often 100% is "assumed" to be a starting value by which to compare later PCR results on your blood.

My guess would be you were up towards 20/20 which means 20% is indeed a reduction. And given that, waiting to see what happens at 3 months is sensible. WHich in turn means I do think a 3 month PCR is important - indeed, I was told (in 2009 when I was going through what you are now) that that was the first one that had any real significance. Certainly, more recent thinking is that the 3 month figure can be significant although it isn't necessarily the case that if you aren't say at the 10 % figure that means you won't reach MMR or better. Plenty indeed most do I think.

I certainly don't think you should have been laughed at when you mentioned the 3 month figure - that paper was written by David Marin and others at the Hammersmith and therefore has some weight.

So, my feeling is don't panic but make sure they do PCR at 3 months. They should and I disagree that that isn't enough time - it certainly can be. I would discuss all of this at Newcastle - I would listen to what they have to say in preference to what your current doctors are saying.

Good luck

Richard

Hi all,

Thanks again for getting back to me with some real positive stuff.

Thanks for that link Chris, and thanks Richard and David also for your input. Its all a huge help and I have printed the guidelines for my appt next Thursday, hopefully the consultant I see will be able to help me understand where I am with response. I have asked for my PCR results in international scale, and have been told the 20% figures are in is. I am a bit confused about the <66% ph+ in 3 months for optimal response, and was wondering if this score is 66% of your original score on diagnosis or in my case after first PCR first month at 20.98%... Therefore below 66% of the 20.98 after 3 month. Anyway I have all these questions and hope they can help me understand things better.

I have only ever had blood taken from the start and have asked how can they be sure of CML and nothing else, and they keep just saying by microscope at the lab and projecting ultra bright high green light on the sample.

Thanks again.

All much appreciated and take care!

John